Bring on the LTD fight

May 30, 2012

I don’t get truly angry very often, but today was one of those days.  I’m not talking about getting a bit mad.  This isn’t about being pissed off or annoyed.  I’m talking about blood boiling, can’t stop shouting, punching things kind of angry.  But without the punching, since my joints can’t take it.  But if I could, I’d have punched some pillows, or maybe worse.

To be honest, I never expected it to be easy to get my long term disability (LTD) claim approved.  I assumed they would make it difficult.  I didn’t expect to encounter pure ineptitude, though.  It is infuriating!

I won’t go into the details.  They aren’t that interesting to an outsider and I’d just get mad if I typed them all out again.  Basically, the LTD insurance company uses a separate company to get my medical records.  I was told they use this company because they can follow up with the doctors’ offices more frequently than the LTD insurance agency can.  Too bad this isn’t true.  As it turns out, this company hasn’t been following up.  I spoke today to a doctor’s office who contacted this company on APRIL 30!, then was never called back.  When the company did receive records from another doctor, they misplaced them and only realized it when they turned up 3 weeks later!  Until the records appeared, these people were saying that they hadn’t received the records at all.  Like I said: inept.

In all, this company’s ineptitude has set my claim back at least 5 weeks.  That’s based on the setbacks that I know of.  My guess is that there are others that I haven’t discovered yet.  But I will.

I don’t plan on taking this lying down.  First, I contacted the LTD insurance company and made it clear that from now on, I will handle anything that horrible company would have done.  They are to have nothing at all to do with my claim from now on.

Second, as soon as my claim is approved (no point in ruffling feathers before that) I am going to call the CEO of that inept company, I am going to file complaints with the LTD insurance company, and I am going to report that company to every regulatory agency that I can think of.  How dare they make worse a time that is already so difficult for people?  And don’t get me started on the idea of such inept people handling so much confidential information!

It took a lot of heavy pacing, a lot of nasty words, a lot of venting to a friend, and a lot of effort, but I have finally managed to reduce my anger to mere… well, at least to a lower level of anger.  I am certainly not doing this for those idiots, though; I’m doing it for me.  I need to relax and take care of my body.  And then when the time comes, I will definitely hold them accountable.

All signs point to starting over

May 29, 2012

***Check out the Patients for a Moment blog carnival hosted by Chronic Babe***

Sometimes all signs point the same way.  This seems to be one of those times, so I better pay attention.

The symptoms started when I was 12.  I got the IBS diagnosis at 22 and the PCOS diagnosis at 25.  The “big one” was in between at 23: undifferentiated connective tissue disease.  This doesn’t mean a whole lot, but vague as it is, it’s more than I had before.  Hypothyroid came around age 26 and Hashimoto’s was around age 31.  There were others in there too, but they were smaller.  Then again, I thought most of these were pretty small, too.  After all, hypothyroid didn’t mean anything more than taking a pill every morning.  And according to my doctor, Hashimoto’s had the same treatment as hypothyroid.  PCOS also didn’t mean much until I was ready to have kids, which hasn’t happened yet.  And IBS is a nice name and all, but the only treatment is diet, and I was really left on my own to figure that out, aside from the somewhat-useful-in-a-very-limited-way pamphlet I got from the doctor.  No, the big one was definitely the connective tissue diagnosis.

I had symptoms for 11 years before I got any sort of autoimmune diagnosis, so I’d had plenty of time to come to terms with my symptoms and their permanence in my life.  I had a good handle on things.  So why did my world turn upside down again with that diagnosis?  Suddenly I was going through the 5 stages of grief all over again.  It was like I had to start over.

Last year my symptoms got much worse than they had been before and I finally had to leave my job.  That short absence has turned into a permanent one (at least from that job) and that pushed me to start researching my illnesses all over again.  I want to get back to work at some point.  I want to date.  I want to actually live my life!  So I found web sites and books and online groups.  I discovered some new things I hadn’t known about, and suddenly I was starting over with everything.

For the last month my mind has been whirling with the possibilities.  It has been overwhelming and frustrating, but it’s also provided some hope for the first time in many years.  I may be worse now than I was before, but it seems possible that I could improve, and feel better than I ever have in my adult life.  I’m scared to think that way, but it seems possible.

Every week WEGO Health hosts a tweetchat for health activists (Tuesdays 3pm EST, #HAChat – please join!)  Among other things, today we discussed the effects of having a diagnosis.  That really got me thinking about how I feel like I have a new diagnosis now.  In truth I have the same diagnoses as before, but I’ve just realized that Hashimoto’s and hypothyroid should be treated differently and that my PCOS and IBS could be treated differently too!  It’s as if I was just diagnosed.  I’m considering treatments that I’d never heard of until a few months ago.

As my wheels were still turning this afternoon, I found out about the Patients for a Moment blog carnival being hosted by ChronicBabe this week.  The topic?  “Starting fresh.”  Perfect, right?  Here’s what they want:

Is there something you’re doing that’s new, or different from how you’ve done it before? Are you starting something over that you previously didn’t succeed at doing? Are you giving a new doctor, medication, lifestyle behavior or workout regimen a shot? Fill us in on your experience!

Like I said, all the signs were pointing the same way.  So I gave in.  I took the time to really think about how strange it is to be going through all of this, especially so many years after what I had thought was my “definitive” diagnosis.  This just goes to prove that the learning never ends.  I am reading constantly, following blogs and tweetchats, trying my best to figure out which is the best approach to take.  I am talking to alternative practitioners to learn about their different approaches.  [I’ve been amazed at how willing they are to spend 1/2 hour on the phone telling me about what they do – the traditional doctors I contact don’t do this.]  I am on a gluten-free diet and looking into more dietary changes.  I am researching supplements and different medications.  I am adjusting my expectations.  I am asking for ideas from friends and family.  For the first time in many years, I can be proactive again.  In short, I am acting like a newly-diagnosed patient almost a decade after my first diagnosis and two decades after the onset of symptoms, and I love it. 

That kid thing

May 23, 2012

Just when I think I’ve accepted that I’ll never have kids, I get pulled back in.

Most of us are taught that life is supposed to go a certain way:

grow up –> get a job –> get married –> buy a house –> have children –> retire

Of course a lot of that is just social conditioning.  That is the path that some people will take, but it isn’t the path for many others, and that’s fine.  The important thing is that each person does what is best for them.  It’s important to first figure out what you really want, then find a way to make it happen.

I’ve thought a lot about what I really want, and I realized that I really do want children.  I don’t feel the need to own a house (though I still feel the social pressure for that) but I really do want to have kids.  I’ve watched many close friends have children in recent years, and as fun as it is to be an auntie, it makes me ache for motherhood.  [This picture is me as an auntie.]

The idea that I won’t have kids isn’t new.  Between my actual physical problems which would make pregnancy difficult (I’d have a lot of bed rest, I’m sure), the PCOS which would make conceiving challenging, the trouble I’d have caring for them, and the genes I could pass on, I decided a long time ago that I wouldn’t have kids. Well, I mostly decided it.  I mean, I thought that would be the case.  I guess a small part of me always held out hope that things would change.

Watching my friends go through it, I try to focus on the bad parts.  Pregnancy does crazy things to a woman’s body.  Babies are all about sleepless nights and disgusting diapers.  They complicate your life.  They cost money.  Who needs it?  Life is easier without kids.  And a few years ago was one thing, but now I’m about to officially be in my mid-30s, so it’s not like I could get pregnant for much longer anyway.  I can’t imagine being able to adopt kids with my health problems, and again, how would I care for them?  No, I simply won’t have kids.  That’s all there is to it.  [Of course, it’s always possible that I’ll marry someone who has kids from a previous relationship, but that’s a bridge I’d cross when I came to it, and I’m definitely not counting on it.]

In the last few weeks I’ve been doing a lot of research about some treatment options for my health problems.  There’s no cure, of course, but for the first time I can imagine that things could actually improve a lot.  My energy could come back, the pain could decrease, the nausea could mostly go away.  If that happened, I’d want to date again, and maybe I wouldn’t be so worried about letting someone get close to me.  Maybe I’d finally meet someone to marry.  I also read about fixing PCOS.  Maybe I’d even be able to get pregnant easily.  If I really felt better, and was in a solid relationship, maybe I’d have kids….


I caught myself in that train of thought and it was as clear as ever: I still want kids.  I don’t want to want them.  I’d love to not want them.  Call it the biological clock, call it social conditioning, I don’t care what you call it.  I want kids.

It’s very unlikely that I’ll ever have children of my own.  I’d love to avoid kids altogether, to forget they exist, but of course life doesn’t work that way.  Health problems have robbed me of a lot of things that I’ve managed over the years to accept.  I never had that great feeling of invincibility that I’ve heard most teenagers have.  I had to work twice as hard in school because I couldn’t write.  I’ve lost relationships and avoided starting relationships.  I’ve lost jobs and missed out on great career opportunities.  And I won’t have children.  I hope that one day I really can accept that.

A little support goes a very long way

May 21, 2012

I have two kickass (if I do say so myself) blog posts in the works, but I’m going to hold off on those for now and instead ask you to take a look at yesterday’s post if you haven’t yet.  And if you’ve already read it, please write a comment.  I know that everyone can relate in one way or another – I’m guessing most of us have had trouble finding a doctor or other practitioner, or going against the “standard medical advice,” at some point.

I’ve gotten so many great comments in my email, through Twitter, and on this blog, and it’s helping so much.  Some people are offering practical advice for my specific situation and others are offering general support, and they are equally welcome.  So please take a look.  I’ll pick up with other topics again soon, so stay tuned.  Trust me, they really are kickass.

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